Meeting with Anne Milton, Health Minister, October 24th

I recently attended a meeting with Anne Milton, Health Minister, on Monday October 24th at the Department of Health in London.  My MP, Mark Garnier, managed to get me on the list of attendees.  I was keen to attend to tell her personally how I felt about her announcement in January of this year which I believed failed the majority of the bleeding disorder community who had been affected by contaminated NHS blood products.

This was our introduction to Ms Milton and her associates:

Thank you very much for seeing us all today.  We would much prefer not to take up your time, but following your review and announcement regarding contaminated blood products in January 2011 we felt compelled to request this meeting, to urge you to re-visit the decisions made.  Specifically the one to retain the separation of the Hepatitis C infected community into two groups - stage 1 and 2 – when there is so much evidence that HCV is far more than liver disease.  People within the Stage 1 group are ill, but not through liver damage. 

When Andrew Lansley (MP) introduced the review findings he said that he hoped they would remove anomalies in the existing support system and that they could bring us some comfort, consolation and maybe even closure.  We believe that none of these objectives were met.  Your decision was that continuous financial support was only required by 20% of our infected community, leaving the majority still suffering, struggling and still fighting for help.  Maintaining defined stages of illness for Hepatitis C has increased not removed anomalies.  We do not think the levels of support offered are adequate but today we are requesting the immediate ending of the two tier system.

We believe that this is a fundamentally flawed decision and that an infected person deserves and should receive help because they were infected by NHS treatment, not if they meet highly specific, difficult to prove, levels of illness.  We do not believe the conditional and means tested Fund which is being offered is a step forward, rather it is an echo of the system criticised by this government and is vastly inadequate given the needs of those within the stage 1 group. 

Some of us belong to the various contaminated blood campaign groups.  I would like to stress that we are here today as individuals speaking only on behalf of ourselves but working for the benefit of all those who have been marginalised by your actions.  We hope to illustrate this by our own personal testimonies and the information included in our pack.

I will put the evidence we gave her on here, in post to follow...

 

Your Blood Supplement - Part 3

This is the third and final part of the piece I submitted to the Independent newspaper for their Your Blood Supplement.  Only a tiny bit was included in the final piece and you can see it here:

Your Blood Supplement

Your Blood - Part 3

I found out just before I went to university that I had contracted Hepatitis C through contaminated blood products.  Not really understanding what it meant at that stage I tried to forget about it and enjoy my university life.

I spent 6 weeks after university travelling around Chile with my best friend and though it was difficult to carry my clotting factor everywhere, when I had a massive nosebleed because of the altitude in the Andes it came in very handy.

Since then I have spent a lot of time dealing with the Hepatitis C, having two lots of treatment for it which made me very ill, and which I’m still suffering the after effects of 10 years later.  The treatment did eradicate the Hepatitis, for which I’m very grateful, but I have been left with long term chronic fatigue which has had a massive impact on my life – much more so than my bleeding disorder.  I’ve always said I can live well with a severe bleeding disorder, and I do day to day, but having a virus given to me and this taking away my ability to work and to live normally and have children is devastating.

I’m now 37 and bleeding-wise I am pretty stable.  I’m on high dose hormone pills to control my periods still, which suits me.  The alternatives for someone with my condition would be an endometrial ablation which has success in many cases, or a hysterectomy which used to be the treatment offered to young ladies with von Willebrands but today is generally a last resort.   I have frequent gum bleeds which can be apropos of nothing or which can be caused by a crisp, or an apple, or a banana even.  My nose bleeds are less frequent and I only have them when I have a cold or when I fly anywhere.  I still get occasional joint and muscle bleeds and bad bruising at the drop of a hat.  I inject myself anywhere from once a fortnight to twice a day, depending on the nature of my bleed.  My attitude is that I get on with things and don’t worry because my mum does that for me ;)

I am lucky in that my condition was diagnosed when I was very young and was well managed whilst I was growing up.  If I had not been diagnosed I’m sure that my life would have been extremely difficult and potentially hazardous.  The problem that we still face is that von Willebrand’s disease is not a recognised and well known condition, in the medical profession as well as the public – even though in its mild form it affects 1% of the population.  Many of those 1% are undiagnosed and may just think that easily bruising and nosebleeds run in their family.  In fact diagnosis can lead to careful long term monitoring, access to medications that can make life easier and proper management of any surgery that may be required.  The knowledge of those involved in the care of people with this condition is increasing all the time.

For the one in a million like me who have a severe form of the condition, nowadays the treatment is usually prophylactic – that means regular preventative injections of clotting factor.  This is instead of injections after the event and can prevent bleeding episodes or tone them down, and will prevent joint damage such as the arthritis I have in my ankles.  The off-putting thing about this at the moment is that our clotting factor is still manufactured from heat treated human blood products and therefore there is a level of risk as such.  Whilst haemophiliacs are mainly treated by manufactured, synthetic (recombinant) blood products, because there are smaller numbers of us von Willebrands the development of recombinant products for us has been slower.  I believe however we are getting there and for me this will be a great step forward in the next few years.  I also read with interest the recent research that is being done on gene therapy and the hope that one day this could provide a complete cure for a genetic blood condition like mine.

Your Blood Supplement - Part 2

This is the second part of the information I sent to the Independent for their Your Blood supplement.

It is being published tomorrow Friday 2 September - I'll put the link on here in due course.

Your Blood - Part 2

The next major challenge was, unsurprisingly, when my periods started.  This was a moment my mum had dreaded and it lived up to her expectations.  I bled for weeks each time with very little break in between periods.  I was treated often – by now the treatment was injections of clotting factor manufactured from many blood donations – and also spent a good deal of time as an in-patient having blood transfusions. My teenage years were interesting to say the least.

I was referred to an enthusiastic gynaecologist at the age of around 14 to see if my periods were so bad because of a gynae problem, but no, it was just my bleeding disorder.  He did however experiment with the hormone pill until we found a high enough dose to control the bleeding in some way that meant I didn’t have to go to hospital multiple times every period and could try and resume a normal teenage life.
 
My other issue during this time was that I had a number of spontaneous internal bleeds that required investigation and aggressive treatment and meant a good deal more time in hospital and off school.  These were bleeds that were not caused by anything specific and that I only knew about because of the extreme pain and swelling.  However I managed still to get both my GCSEs and my A levels and went off to university feeling really grown up.  

By this time I had taught myself how to self administer the injections.  This changed my life totally because we no longer needed to be within a safe distance of a hospital but I could take my treatment with me and go anywhere – I really felt like the world was my oyster!

To be continued ...

Your Blood Supplement

Recently I was asked to write about having von Willebrand's disorder for a supplement called Your Blood which is soon to come out with an issue of The Independent.  I was asked to write a paragraph but being me that was like trying to insert an elephant into a letter  box.

I am going to publish on my blog what I wrote, as it's a synopsis of my life with funny blood and I've not really put anything like that on here so far.  The supplement that is being published contains a mere snippet as they only had a tiny space to fill.  On here I'll break it down into sections. 

Your Blood - Part 1

When my mum and dad adopted me at the age of 6 weeks old in 1974, they thought they had been given a perfect little girl.  At the age of 6 months when mum was at the GPs and mentioned that I had a bruise, she expected the doctor to say, oh yes that’s quite normal.  She did not expect what actually happened next.

I was referred to the hospital to have blood tests done.  Mum sat on a stool at the hospital with me on her knee while they pricked my ear with a needle and watched it bleed.  After over an hour with me crying and mum worrying, they told her the fact it had not stopped bleeding was abnormal and that I would need more tests.

Mum was told by the Royal Manchester Children’s Hospital (RMCH) that her daughter had severe von Willebrand’s disease later that year.  The next few years were particularly tricky.  Learning to crawl, to walk and cutting then losing tiny teeth were all massive challenges.  Mum and dad decided early on not to wrap me in cotton wool – though they were tempted, and some padding fashioned from socks with their toes cut off, filled with foam rubber, were popped over my knees when I began to crawl.

As a severe bleeder every time I bumped, tripped over or cut myself we had the pleasure of a trip to the hospital over 20 miles away.  This could be many times a week.  When I bled it wasn’t necessarily heavy but it oozed for hours without stopping until I had treatment.  Treatment in the 70s consisted of cryo-precipitate, which had to be defrosted once we arrived at the hospital, and then loaded up into a 50ml syringe or into bags that were infused via one of my veins.  

I remember a lot of my childhood as being spent in hospital and the nurses became part of our family and I felt at home there.  I bruised very easily and had frequent nosebleeds and gum bleeds, all of which meant a trip to RMCH.  I also had problems with internal bleeding into my joints – these were very painful and more disruptive for me as I had to rest until they got better.  I also had to be pushed to school in a big blue stripy buggy which as a girl of 6 or 7 was not much fun.  Generally though I lived my life as normally as possible given the amount of time I was on my way to, or from, or at hospital.

To be continued...

I beg your pudding?

I used to be a good listener
Or at least I thought I was
You, dear friends, 
Might tell me different
And I wouldn't mind :)

I tried to be a good listener
Attentive, empathetic, sympathetic
Remembering details
Recalling them for future conversations
Enjoying sharing such a simple pleasure

Now ...
Now it's now so much fun
Not so rewarding
Not so participatory
The intention is still there
I intend to listen
To converse
To share and enjoy
But I'm disabled
Un able to
I'm limited
By my CFS

I can listen for only so long
Can focus for only so long
And so long ain't that long
Before I drift away
Before my mind wanders off
Like a distracted chicken
Pecking at the corners of my concentration

My eyes glaze
My ears glue
I can see you
But you're fuzzy at the edges
I can hear you
But I'm fuzzy in the head
It doesn't go in
Just bounces off the fuzz
Into nothingness and nowhere
I nod
I murmur agreement
You may not even notice

But the one thing I am aware of
Is that I'm gone
I'm not really with you
I'm inside
Looking out through fogged up glass
Desperately wanting to listen
To hear
To share
I wish I was taking it in
But I'm not there

For a limited time only...

This is me practising for my audition to join the choir Voices Unlimited.  I'm putting it on here for a short time so my friends can see it, as it wouldn't upload to Facebook.

Too late - you missed it!

Apologies if I'm boring you for posting yet another video - inspiration of the written kind is evading me at present.

Good news is ... I got in - woopeeeee :)

Get Well From ME

I discovered these videos the other day through a Facebook friend and fellow CFS sufferer.  The maker and narrator of the videos, Giles Meehan, is a recovered ME patient.  That makes him sound like an alcoholic - sorry Giles.  The point is he has got better and he has developed a website and a number of really informative videos to raise awareness about this often misunderstood, far more common than you might think, and devastating illness.

I found this really easy to follow as he incorporates subtitles into the video to back up what he is saying.  It is an excellent introduction to the condition of ME / CFS and makes it clear how complex a disorder this is in terms that someone struggling to understand will comprehend.

If you check out his website:

Get Well From ME
you can read the entire transcript for this and see the rest in his excellent series of videos.  However, I also intend to publish them on here in time.

Hope that you find this informative - for me it was a case of total recognition.

xxx

I Bruise Easily

My song.  Sing along if you like, I will be. 

Always loved it:

x

ME / CFS International Awareness Day 2011

Today, Thursday 12 May, is International Awareness Day for ME / CFS and Fibromyalgia.

Some of those raising awareness suggested wearing purple so I did that today. Like many other not so good days I spent the day in my pyjamas and dressing gown. My purple dressing gown.





I thought today well worthy of a blog post. I've not written anything for a couple of months. There are many reasons for that, from lack of inspiration to laziness but the most apt today is the reality of living with multiple invisible health conditions and the physical and mental toll they take.

Did you notice, in the photo of my dressing gown basking in the sun above, the little purple flower?

It's a weed actually, which has pushed its way determinedly up through the patio. I won't pull it up because I admire the little fellow. He's got spirit and he puts on a bright front to hide the pestilent weed inside.

When I was a kid with only one invisible disorder - type 3 Von Willebrands, a severe bleeding disorder, I insisted on working and living through bleeding challenges. Of course when I say invisible I'm not meaning the times when my body was covered in purple and yellow bruises, nor when I had to go to school in a giant blue and white striped buggy at the age of 6 with ankle bleeds, but merely that the illness is within and when looking at me as a child no-one would've said - oh yes, there goes a severe bleeder. My point is, like most bleeders, I tried not to let it stop me or limit how I led my life. I studied when I was in hospital having blood transfusions, I danced when on crutches having had an arthroscopy, I worked when I was bleeding from blood poisoning until I could barely stand from losing so much blood. My attitude was always I will do it! And most of the time, with the help and encouragement of friends and family, I did.

Whizzing time travel style to now and I'm faced with a plethora of invisible illnesses. A myriad of covert maladies. I need a group noun all of a sudden ... an affliction? A challenge? An infection?

My Von Willebrand's resulted in Hepatitis C from my treatment, this resulted in CFS from either the HCV treatment or the virus itself, this has expanded over the years to include formication, fibromyalgia and from time to time depression.

I would describe living with all these issues together like being in enforced limbo.

Waiting. Waiting to feel better, waiting to move on with your life, waiting to be able to do what you want to do rather than just what you're able to, waiting to not have to manage everything so as not to make yourself worse, waiting to return to "normal".

And it's hard. It's hard not to retreat from all those who when they say - you don't look ill - mean nothing but, gosh you look well for someone poorly, in an well-meaning kind of way. It's hard not to scream when someone asks you if you're feeling better when you haven't felt "better" for over 5 years now.

Believe me I actually feel pretty good most of the time - pleased to be alive, pleased not to be more sick, pleased to see the cherry blossom or manage a little bluebell walk, pleased to listen to birdsong or church bells from my bed, pleased to sing at the top of my voice in the shower or the kitchen or the garden.

And I believe it is totally possible for me to get better from at least one of my illnesses. Not the Von Willebrands. That's with me for life and as an old friend I'd be sad to lose it. The Hepatitis C is also theoretically gone, having kicked its arse with interferon and ribaviron, and I'm praying that truly is the case. The CFS, fibromyalgia and formication. They're just visitors, their time is limited. Admittedly this isn't a cure, it's a catalyst ... but I'm determined, you see, and strong.

Just like that little purple flower.




- Posted using BlogPress from my fancy pants phone

Betrayal and Lies -- Please Share

This video has been put together by a fellow contaminated blood campaigner and friend of mine, Richard. It contains contributions from a number of friends, many of whom are tragically no longer with us.

It is disturbing but essential viewing if you are interested in the unnecessary infection of thousands of bleeders like me, through our NHS treatment.

Please take the time to watch and share it where possible.

Thank you x

And the germs keep coming, coming ...

On the second night of lurgy,

my bad bug gave to me:

12 tatty tissues

11 sniffs a snivelling

10 turns a tossing

9 sudden sneezes

8 soothers sucked

7 toilet trips

6 chapters read

5 vay pour ruuuubs

4 drinks of water

3 sleeping tablets

2 lem sips

And a damn near non-existent night's sleeeeeep!

- Posted using BlogPress from my iPhone

There's something about you, speeding through my veins until we hit the ground

Been a bit bleurgh lately and my blog's been somewhat contaminated with blood issues. 

Let's lighten the duck up with a cracking song:

Happy Valentines Day to anyone who bobs by xxx

Letter to the Health Minister regarding the Contaminated Blood Announcement

I am writing following your announcement to the House of Commons on Monday 10 January regarding HIV and Hepatitis C contaminated blood and blood products.

I appreciated your apology on behalf of this administration and those who have failed to address this - the greatest tragedy of modern health care.  I trusted that when you said you were trying to remove anomalies in the current support arrangements, you meant it.  I admired your hope that whilst your announcement could not remove the pain and distress that we as individuals and families have suffered over the years, that the measures you announced could bring us some comfort, some consolation, and maybe even some closure.

I am really sorry to say that upon listening to your announcement I was bitterly disappointed.  Not only did it not offer comfort, consolation or closure but it was rather like someone poking me unmercifully in a particularly painful bruise.  We bleeders have had a number of let-downs over the years but I have never been more angered and disillusioned in my life.

The results of the review and the ensuing support you have proposed will not offer comprehensive support to all those affected by HIV and Hepatitis C contaminated blood, nor will it double payments to £50,000 for the 4,670 haemophiliacs affected by the HIV and HCV contaminated blood products as some media reports have suggested.

Some points based on my own experience may help you to understand why I make the statement above.  I have a severe bleeding disorder, von Willebrand’s disease.  I received blood products from the NHS from the age of six months old.  I have been infected with Hepatitis C and exposed to vCJD.  In terms of what your announcement will provide me:

• ·         Free prescriptions – which my two cousins who have diabetes received the instant they were diagnosed, why do haemophiliacs and other bleeders not already receive this concession?

• ·         Free counselling – I recently underwent counselling from my GPs.  I waited 4.5 months for 6 sessions, at the end of which the counsellor expressed his awe at my inspirational manner in which I coped with everything that had happened to me and said he thought I didn’t need any more sessions.  We had barely stroked the surface.  I would really appreciate the support a good counsellor could give but would benefit from in-depth long term support.  You are providing 6000 hours counselling over the next three years.  This amounts to just under one and a half hours per person with infections caused by blood products or their widows / widowers.  I do not consider this to be a comprehensive solution.  Why impose such a limit?

• ·         Access to a discretionary fund – I have had two courses of treatment for Hepatitis C.  Both of these left me extremely ill and unable to work for the duration of the treatment and many months afterwards.  Since the second course of treatment I have been left with chronic fatigue which has taken away my ability to work and has been directly linked to the Hepatitis C.  I have ‘cleared’ the virus so I guess in the opinion of your medical panel my quality of life is greatly improved.  However I have many symptoms that suggest my liver is not healthy and my quality of life is greatly compromised and my future uncertain.  The idea that for any financial need I have to come begging to get even a modicum of help is not good enough.  Will this fund replace my lost earnings?  Will it compensate for not being able to get a mortgage or being unable to get sickness insurances?  Will it pay for someone to clean and help with my daily needs so that my mother doesn’t have to anymore?  Will it compensate for the fact that my husband and I are unable to have children due to my ill health or that some nights I cannot cook his tea or hold a conversation by the time he comes home?  I would like to know the remit for this discretionary funding as soon as possible.

What your scheme does offer is an increase in the second stage Skipton Fund payment of £25,000 and annual ex gratia payments of £12,800 per annum.  This is by no means the levels of payment that we were hoping for, but might have been seen as well intended, if they applied to all the 4,672 of us affected by contaminated blood products.  However, the numbers currently meeting that stage two Skipton Fund criteria are approximately 15% of our community. That leaves roughly 3,800 haemophiliacs or those with von Willebrand’s disorder with the provisions outlined above, or in the case of widows and families of the deceased – nothing.

I would like to also point out a number of other inadequacies that your new scheme will put in place.

• ·         You are removing the current anomaly which has meant widows of anyone dying from Hepatitis C before August 2003 would get nothing.  This is long overdue.  In its place you are providing a window of two months – until the end of March – for them to apply for the stage 1 and 2 Skipton Fund payments.  Why is it necessary to have a cut off date at all?  Surely if someone is eligible it doesn’t matter when they apply?  Or is this an attempt to limit the number of applications and therefore the cost?  You are asking the widows affected to access their partner / husband’s medical notes, wade through them to see if he is eligible (a traumatic task for any of them) and find a consultant willing to sign off on their stage two application.  By the end of March 2011 this will be nigh on impossible.

• ·         You are providing support to those who meet stage 2 of the Skipton Fund criteria.  This immediately divides the infected community to those infected and suffering, and those dying.  Not offering annual payments until someone has developed liver cirrhosis or cancer seems to me a very fiscal decision as they by nature then have a severely limited life expectancy.  I presume those annual payments cease once the person dies?

• ·         When HIV support was announced, whilst it was a flawed scheme, it at least paid out to all those infected, a decision you have chosen not to take for HCV infected.  I know when those payments were made, the prognosis for HIV infectees was bleak.  Nowadays the treatments are such that many with HIV are relatively healthy and do have some quality of life.  However, whilst your report acknowledges that people infected by chronic Hepatitis C – that’s 4670 of the bleeding community – suffer a demonstrable loss in quality of life, at least as great as those with HIV, your lack of on-going and non-discretionary support does not back this up.

• ·         The proportion of our affected community that will receive the ex gratia payments is roughly 15%.  I do not consider this to be comprehensive or adequate and how you could think this would offer comfort to many, is beyond me.

• ·         I believe the Stage 2 criteria that once met entitles those affected to an extra £25,000 lump sum and annual support of £12,800 to be flawed.  I am aware of some cases where haemophiliacs have been certified by their doctors as meeting these criteria when they do not.  I do not begrudge my friends to whom this applies, I am pleased for them as they no doubt deserve the help.  But whilst this appears to indicate the support of the doctor for the patient, it does make this method of classifying need unsound.

• ·         For some reason the scheme only applies to England and you had not spoken to the equivalent ministers in the devolved administrations prior to your announcement to make them aware of your plans.  You say it is up to them when and if they administer the same arrangements.  I am urging Wales, Scotland and Northern Ireland to reject this minimalistic approach and put in place something that is actually comprehensive and does meet the needs of their citizens who are NHS infected patients.

It appears to me that whilst saying the right things, your actions have entirely failed to back this up and in fact only succeeded in doing the minimum for the minority.  You asserted a number of times that this was not due to cost but how else can one view these measures?

For those of us with Hepatitis C it seems from your announcement, not to matter that we were infected until we meet this deficient criteria at a potentially life threatening stage of our illness.  Even then what we will be offered will be too little to be of much use and at a time which is too late.  That’s approximately 4000 of us who have had our lives shattered by contaminated blood products – unable to work, unable to get mortgages, unable to obtain life and travel insurances and unable to have children.  I’m not talking about a few exceptions within that 4000, I’m talking about most of us.  It seems from your discussions with patients and patient groups that you have not taken this on board but have instead taken the word of medical specialists who are not living with the condition and all the difficulties that entails.

I acknowledge that those from the 4000 who met the Skipton Fund Stage 1 criteria did get the first payment of £20,000 but that was over ten years ago now and we have had no help since.

I would also like to take issue with your insistence that the Republic of Ireland paid out compensation because they accepted liability and the case here in the UK is different.  Were you not aware of the High Court case last year in which the honourable Mr Justice Holman ruled that the Irish paid out on compassionate grounds, with no acceptance of liability?  Would you please explain how you think the High Court ruling does not apply?

Given that your aforementioned statement is flawed I would like to revisit the argument used by Anne Milton for not adopting the Irish levels of ex gratia payment which were based on your estimate that the cost would be £3.5 billion.  From the estimation I received from Anne Milton:

• ·         You used the figure of around 4700 infected with HIV and / or Hepatitis C from Lord Archer’s report.

• ·         You made an assumption that the Republic of Ireland (RoI) infected individuals received an average of £750,000.  This was based on informal discussions with RoI colleagues which indicated that payments ranged between £500,000 and £1 million.

• ·         Your estimation therefore was a calculation based on the estimated number of infectees 4,700 multiplied by the payout in RoI of £750,000, which equated to £3.525 billion – and you stated that this wouldn’t include anything for carers or dependents.

My interpretation of this estimate was that this would mean you awarding £750,000 to the total number of those infected by contaminated blood products.  It would also include payments of £750,000 to widows or families of those within the 4,700 who have died.  That would indeed be a one off £3.525 billion cost but would, in contrast to your statement, have included carers and dependents. Our community had suggested that this could have been spread over three or more years to spread the cost in these difficult times.

We campaigners do persist however, in our assertion that cost savings were a causal factor back in the 70s and 80s for this hideous tragedy occurring.  And therefore that citing this argument now after 20 years of government inaction is adding insult to injury.

You may ask what I would consider a meaningful level of support - I would suggest a reasonable and comprehensive support arrangement to be:

• ·         A lump sum ex gratia payment made on moral grounds to all patients infected by contaminated blood products or their widows / families (4,672 people) of £300,000 – this payment could be made over three years and my total estimation of cost would be £1.4 billion.  Or £467,200,000 per annum for three years.

• ·         An annual ex gratia index linked payment made on moral grounds to all patients infected by contaminated blood products, to be paid whilst they are still alive (est. 2600 people) I suggest the median between the average annual wage and the minimum annual wage - £18,500 per person infected. My estimation of cost per annum would be £48.1 million but this figure would decrease in line with deaths.

• ·         The total cost for my scheme would be £515.3 million per annum for the first three years and then £48.1 million decreasing from then on.  You would subtract from this the current cost of the HIV annual payments, which this scheme would replace.

• ·         In order for the costs to amount to your estimated £3.5 billion this scheme would need to run for 43 years.

This illustration is my own and does not represent the views of anyone else.  Whilst I wouldn’t claim that this would bring comfort or consolation to any of those infected because it is only money and I’m sure it would be far from closure for some, I do think that it could at least be considered compassionate and constructive support that acknowledges and respects the suffering of those harmed in this tragic way.

In composing this letter I have had to find energy where there is little, coherence where there is often confusion, fight when I desire peace and action when my body cries out to rest.  The delay in sending reflects the mental and emotional effort writing this letter has demanded and I do hope you reflect on that when composing, or not, your reply.

Health permitting I would be willing to discuss any of this further with you and your department as we continue to work towards a just and appropriate solution.



Sent today to Andrew Lansley Health Minister, David Cameron Prime Minister, Nick Clegg Deputy Prime Minister, Mark Garnier my MP, Ann Milton MP, Diane Abbott MP, Geoffrey Robinson MP, Philip Lee MP, Chris James CEO The Haemophilia Society.  Not holding my breath for replies...

Government Announce Results of their Contaminated Blood Review

I'm really upset. The government are doing the least amount they can for those who meet the stage 2 Skipton Fund criteria and widows who can prove that their partners met that criteria. This is a small minority of our community and an inadequate, difficult to fulfil criteria. It is so minimal I'm bloody crying. 

What about the majority of us affected by this, as Andrew Lansley the Health Minister himself said, great tragedy. Nothing. Actually not nothing, free prescriptions and counselling. Well thanks, that makes up for me being too ill to work, being unable to have children, being a sham of a person and having a totally uncertain future. Nice one. 

I intend to blog more fully about the Government's announcement and their arguments against doing anything more meaningful over the next week.

In the mean time - happy new year.